My BRCA2 "Journey"

What an awkward post to write. I couldn’t come up with the title for the longest time, so I moved towards just writing the post and figured I’d come up with a title later. But then I just stared at the blank screen and still no words came out, so here we are. I’ve decided I’ll settle on calling this whole thing a JOURNEY because there are a lot of elements I have to navigate.

The word “journey” conjures up images of contestants on The Bachelor (any other super fans out there?). The search for love – on reality TV, anyway – is always called a journey. My journey will not be as entertaining, or funny, or glamorous as a televised dating competition, and Chris Harrison won’t be here to host it. It might be as uncomfortable at times, because I’m going to do my best to be really honest.

Before I dive into the nitty-gritty, I wanted to tell you a bit about myself. I think many of you probably discovered me through Rue Magazine, or by seeing images of my home, and you might not know much about me as a person. So, hello!

I was born and raised in Boise, and I moved to San Francisco when I met Tim. We relocated to Los Angeles when his company closed their Bay Area offices. We’ve now been here for over 2 years. (Whoa.)

I work for Rue Magazine. I started as an intern and worked really hard to move up in the company. I’m now the Managing Editor. I was able to keep my job when we moved because I work from home!

I am a proud cat-lady. I got Roxanne when I was 20 years old, and she’s been with me through thick and thin. Tim’s cat, Leonard, begrudgingly accepted us into “his” home and I’m obsessed with both of them.

Everything else is pretty run of the mill… I like to do pilates so I can keep eating pizza 3 days a week. I’m interested in interior design and love fashion. I really enjoy traveling and going to places I’ve never been before. I like to watch an entire season of a television show in one evening. I’m a big reader and always looking for a good page-turner. I stay in touch with my friends all across the country, and I’m really, really close with my family.

I mean, sorry for the biography but I feel like if you’re going to go on this journey with me, you should at least know like who I am as a person. And as for that journey, a final tidbit about myself: I have the BRCA2 gene. This means I have a genetic mutation and am at a higher risk for breast cancer. This does not mean I have cancer, it just means I need to be very vigilant with my cancer screenings and preventative care. It’s not the worst thing in the world… I actually have always looked at it as a good thing. Think of it like this: science has given me a leg up on a potential catastrophic condition. Because of the knowledge of the gene, I should be able to catch cancer before it ever turns into anything serious. But that doesn’t mean I am exempt from the emotional distress of it all. Shortly before our wedding, I had a scare and my entire life spiraled into fear while I waited for test results to come back. (I wrote about it on my old website here.) I just couldn’t imagine a future where every. single. time. that something showed up strange on a screening, ALL of the alarm bells would signal and I’d be thrown into this gauntlet of panic and urgency.

So I decided that I wanted to get a preventative surgery – a double mastectomy with reconstruction – to drastically lower my chances of ever getting cancer. (Most people have heard of this surgery because of Angelina Jolie.) I made this decision once we were in a new city with no network and I had no CLUE on where to begin. In San Francisco, I had this incredible doctor and an even better genetic counselor. They knew my family history and genetic predisposition, and were in my corner. They made sure I wasn’t missing any screenings, updated me on any exciting technology advancements, etc. I assumed that I would be able to find something similar here in Los Angeles. I’ll be telling the story of that next time, since this is way longer than I ever anticipated. Just know, it’s been a miserable, discouraging, confusing process so far.

Since this surgery is elective, it’s become very easy for me to pretend it doesn’t exist. Even though I know it’s the smartest thing for me, individually, fear has taken hold and I’ve so far avoided it. TBH, I just want to imagine sometimes that I’m a regular girl with a regular risk for cancer. Like why do I have to spend my time researching doctors and clinics and surgeons… can’t my head just be permanently in the sand? I even received the names of a few women in the area who had undergone something similar and were graciously willing to share their experience with me. Fear had taken such a strong hold at this point, that I totally avoided ever following up. Stupid, and honestly a little rude of me, I know. (Again, just burrowing that head in the sand.) And since I have not yet found a doctor that seems like the right fit for me, nothing has been scheduled.

I chose to tell you this whole sob story TODAY because I have an appointment with a very promising doctor tomorrow. I’m really hopeful it’s the right place for me and I’ll be ready to put an actual date on the calendar. (Literally, almost threw up as I typed that. Just FYI.) I knew I’d be writing about the experience when it began, and I feel like this appointment might be the beginning. So here I am, writing about it.

You might be thinking I’m insane for writing any of this in the first place. And trust me, in a world of over sharing on social media, I cringe at the thought that someone might think that’s what this is. It’s not – I’ve got a few reasons for being so open about something so personal. First, I’ve always been a writer, from my first creative writing workshop on summer break to my career. I am opting to share this painfully personal process because of that identity as a writer. I think it will be therapeutic for me to work through what’s going on by writing about it as it happens. I’ve never been great at keeping journals (anyone else have a diary that always started with “It’s been SO long since I wrote to you!” or was that just me?) so I think that this platform will encourage me to document every step of the way instead of tossing the idea aside. Please note, I do not plan on sharing ANY medical images or getting graphic about procedures. I am modest as heck and also have a pretty weak stomach when it comes to blood. (Can’t even watch Grey’s Anatomy.) This is more about navigating the mental side – the confusion and fear.

Second, I think the element of public accountability will help me move forward. Last year, I was able to quietly ignore the thought of surgery because none of my family or friends really pushed me on it. They respectfully knew it was my decision and it’s also kind of an awkward thing to ask about. While I am glad I chose not to do it with the surgeons I had met with, I am disappointed that another year has passed and it’s still something I should do, not something I’ve done.

Finally, I want to share because I am hopeful that I can be an advocate for proactive health care AND be a source of honesty in a time where social media is fake AF. I want to be open about the emotional ups and downs, and be honest about the confusion – from choosing a doctor to choosing a date.

The last time I wrote about BRCA2, I got quite a few emails from women who had experienced something similar and were grateful to connect with someone who understood. I also received emails from women who were too fearful to check on something that felt “off” in case the results were bad. I know the power of community and hope to foster that. At the very least, I hope to encourage both men and women to be in control of their own lives and their health.

On that note, wish me luck on my appointment tomorrow. I am hopeful that it’s the right place for me and my “journey” and am even MORE hopeful that I don’t cancel the consultation last minute and avoid it for another year. ;-)